what do you do when the MD and his ARNP do not sing the same song

I am begining my 5th week post op. The morning after my surgery, I leaned that my cyst on the ovary was endometrial. About the only thing that the MD told me that day was that he found no cancer and that I should not take any HRT for at least 3 months if not more. I found it hard to wrap my head around the diagnosis as I have never been diagnosed with endometriosis before.

Yesterday was my follow up at my surgeron's (ONC/GYN) only they have the ARNP do the 4 week checks instead of the doctor since he is surgery quite often, I guess. I discussed with her how the lack of hormones were causing my Chronic Fatigue and Fibrmyalgia to flare. I also shared that I did not sleep well and without sleep I would not be able to battle the above diagnoses. we also discussed the hot flashes and night sweats.

She suggested that I go to my GYN and discuss HRT with him. I told her that the doctor told me no hormones, but she kept saying only a little dose to help me feel better. This discussion continued to bother me. I called the office and asked for the physician to call me, only to have my call returned by the Medical Assistant who told me that she would try to help me. What were my questions. I again told her that my questions could only be answered by the MD. She then told me that either I go through her , or I will have to go to the office (1 hr and 15 min away) for an appointment with the doctor. I created a list of my concerns.

1. is HRT safe for me?
2. I have read that since endometriosis is found in the post menopausal woman, if it does reoccur on other organs, it increases the chance of those sites turning into endometrial cancer. Is this a concern for me?
3. I have read that unopposed estrogen is not the proper choice of hormones if trying to prevent the reoccurance of endo. Is this true?
4. Even though I did not have ovarian cancer ( thank you sweet Jesus), my mother did and did this put me at any greater risk for breast cancer?

Also the nurse practioner also told me that when he washes suring surgery, he washes out the endometrial tissue. Guess she did not realize I was a nurse.

I am very confused now and am wondering if any of you fine ladies could chime in on this. I am waiting to see how this works out and if not so well, I will make the drive again.
Please share any knowledge or experience with me.
Katie

First, I am sorry for all you are going through.

Second, many within the medical profession do not agree when it comes to endometriosis. It can depend on which theories each believes, what each has seen in practice, and what each were taught in school. It can even depend on how many women with endometriosis each as treated.

Your MD is saying no hormones for 3 months and there are other doctors who think this can be beneficial. The theory is that without HRT any remaining endometriosis will dry up or die off. That plan is a bit controversial. Other physicians state that the endometriosis doesn't ever "disappear" so it will plump right back up once HRT is started no matter how long you hold off. A further curve ball is that endometriosis can create its own estrogen whether you use HRT or not.

On the flip side of the coin is your symptoms. You talked to the ARNP about your symptoms and she shared with you what would treat them--low does HRT. Everything you shared can be the result of no or low estrogen. There are also other, more serious health risks that can result from no or low estrogen. And she has a point, too. Some medical professionals state that low dose HRT should not activate remaining endometriosis.

Throwing in combination HRT opens another can of worms. Yes, some believe that women with endometriosis should never be given ERT alone. In fact, some doctors won't prescribe any ERT, ever, to women with endometriosis. On the other hand, it is even controversial as to whether or not progestin or progesterone really does keep endometriosis at bay when used as part of HRT, and some say that the dose of estrogen in HRT is too low to be an issue for endometriosis. It all depends on which study you read and with which theories you agree. And of course, not all doctors will prescribe progesterone or progestin for post-hysterectomized women regardless of the diagnosis.

Further more, if all that you had was an endometrioma, you may have no other endometriosis. Not everyone with endometriomas have other endometriosis implants. Thus, you may not have to take endometriosis into much consideration when choosing an HRT plan for you.

To specifically answer your questions:

1) There is no way any of us here can tell you if HRT is safe for you. Whether or not HRT is safe involves more than endometriosis. Then, symptoms have to be considered. As a nurse, you know that long term lack of sleep alone is not healthy. Since that complicates your other diagnoses, your lack of sleep may play a bigger role in your HRT than it might for others. Besides your symptoms, your overall health has to be considered, as does your personal and family health histories. Without estrogen, you are at higher risk for heart disease, osteoporosis, and even death. Depending on your family tree, those risks could play a bigger role for you. You are not in a black and white, one size fits all situation. Personally, I have both ovaries with a stage IV endometriosis diagnosis. That is how important we felt estrogen was for me.

2) The risk of endometriosis becoming endometrial cancer is rare. Yes, it may occur more for post-menopausal women, but it is still less than 1%. However, you had an endometrioma which could lessen your risk factors even more. Did you have any actual endometriosis implants besides the endometrioma?

Those of us with an endometriosis diagnosis do have a higher risk of several cancers but not because the endometriosis becomes cancer. Those cancer risks include ovarian cancer, lymphoma, and even breast cancer. Again, the risk is small enough we need to be aware of it but not take drastic action or panic.

3) As I shared, there are opposing opinions regarding hormones and endometriosis so you have to find a medical team with a philosophy that matches your own. Start there and see if the plan you agree on works for you. If not, there are other options you can consider. Also, there are non-HRT options for treating some menopause symptoms like insomnia and hot flashes.

Keep in mind, if you did have other endometriosis implants besides the endometrioma, it could cause issues no matter what path you choose. It will all depend on your body and how all of your own variables fit together.

4) Your risk of ovarian cancer depends on a number of factors. There are genetic components, having endometriosis is a risk, and there are also several other factors as well including lifestyle and environmental issues. Was your mom BRCA 1 or 2 positive? That could play a role, too. You could talk to a genetics counselor to help assess your personal risks.

I wish there were a black and white, easy answer, but there isn't. For one, endometriosis seems to involve multiple factors and variables. Some women with obvious endometriosis are pain free and their implants are only found incidentally. Others with only flecks of endometriosis have extensive pain. Some are able to use HRT, some are not. Lupron works for some, doesn't for others. Endometriosis may recur, it may not. In fact, it can even dispersal completely without any treatment at all.

You are going to have to find a knowledgeable medical team you trust so you can work together to find a plan with which you can agree is right for you.

Oh, many believe that endometriosis is caused by misplaced endometrial tissue. Thus, like your ARNP they can believe that a pelvic wash could eliminate the risk of endometriosis. Your MD may believe the same.