I am sorry you are in this situation!
Have you been able to sit down and talk to your doctor about all of your questions and concerns? Have you considered looking for an endometriosis specialist
I can share some information with you based on my experience and research with endometriosis and can share with you what I think I would do in your shoes based on how I have treated my own endometriosis both pre and post hysterectomy. Hopefully, some of the info will help!
First, you do need to know that not all doctors are as knowledgeable about endometriosis as we wish they were. And there can be a wide variety of suggestions given by doctors, depending on their own experience and training. Thus, I would strongly suggest you find a doctor who is exceptionally knowledgeable to help you. If you can't see an endo specialist, you might try looking for an endocrinologist (maybe even a reproductive endocrinologist) who might be able to help you.
You also need to know that endometriosis does not necessarily starve to death without estrogen. Instead, there is belief that the endo actually goes into remission and as soon as estrogen is introduced, it plumps right back up. Additionally, it can be difficult for some women to be completely estrogen free. For one, our fat cells can produce estrogen. Two, endometriosis itself has been known to produce its own supply of estrogen. Plant estrogens have been a problem for some women so even foods such as soy and yams or supplements like black cohosh can cause issues. And finally, our bodies can continue to make estrogen by converting dietary cholesterol to progesterone, then to testosterone and then on to estrogen. Unfortunately, many of the above estrogen supplies aren't enough to eliminate surgical menopause symptoms but could affect any existing endometriosis!
The other thing you need to know is that besides quality of life issues from lack of estrogen, there can be actual negative health issues. So, trying to find a balance between preventing/eliminating endometriosis issues while yet not creating overall negative health issues can be challenging! Your GP may be able to help you determine your overall health concerns to take into consideration. I try not to make any major health changes without also speaking to my GP since she treats all me, head to toe!
In your shoes, I believe I would find a specialist who would be able to surgically remove as much endometriosis as possible. Then I would try HRT again. I found great care and success with a specialist! His surgical skills were superb and he had unbelievable knowledge about endometriosis based on his many years of treating women with this condition.
If you are not comfortable with surgery, you might ask about using birth control pills rather than HRT. Birth control pills can have both estrogen and progestin to help provide estrogen while hopefully keeping any endo at bay. You could also try some type of progesterone along with your estrogen replacement. Other options for treating the endometriosis without surgery could include Lupron, Depo Provera, Danazol or an aromatase inhibitor.
There are no easy answers and there are no one size fits all answers either. What works for one of us, will not work for another.
I wish you all the very best and hope that you can find a qualified medical team to help you find a solution for you!