Summary: It was a great appointment.
He is a kind, experienced, and well-educated doctor.
We have a good plan moving forward.
I feel encouraged.
I feel encouraged because #1:
Dr. H said the words, "There is no cure for endometriosis."
It probably seems strange to say that's encouraging, but it completely takes the burden of guilt away. I felt guilty that I have been taking estrogen all these years and somehow guilty just for being ME because I am a person that has this chronic disease. It feels every time I have gone back with symptoms again that the doctor is thinking "AGAIN?!?" Knowing that it can't be cured (though it can be managed!) means that I haven't caused it to be worse through some horrible hidden character flaw!
I feel encouraged because #2:
Dr. H quoted LOTS of RECENT studies (in the last 5-10 years, which have all taken place AFTER my most recent surgery). I quote lots of studies myself, and I love knowing that data (for those of you who are fans of the StrengthsFinder assessment, this is because of my strengths in the area of LEARNING and INPUT!).
First thing he checked: 82% of women with severe endometriosis have pain that is caused by other factors, as well. One of the most common is muscle pain. Current thought is that the endometriosis implants somehow affect the muscles near them, causing them to spasm. If this is happening, even taking out the endometriosis surgically doesn't stop the pain. So treating the muscle pain is more important in those cases than removing the endometriosis. He did some tests - I am not among the 82%; I don't have muscle pain.
I feel encouraged because #3:
Endometriosis growth is not being shown to necessarily be related to exogenous (ingested) estrogen. This means that I can take as much estrogen as I need to take (as much as makes me feel normal), and it doesn't mean I'm "poisoning" myself. It has felt to me in the past as if I had to choose between feeling hormonally normal with pain or crazy insane and depressed without pain. And in neither one of those situations do I have a great quality of life. Dr H told me to take as much estrogen as I need to have a good quality of life. The solution to endometriosis is a surgical one, and when the pain gets intolerable, we will schedule surgery.
Dr H suggested that I wait as long as possible before surgery, because the chronic nature of aggressive endometriosis means I will probably need to have regular surgeries throughout my lifetime when the pain gets bad again. The desire is to limit the number of surgeries in my lifetime. I last had surgery 10 years ago, so if I have surgery now, let's say I would need another one in 10 additional years. But if I can hold off for another six months or another year or two, that gives me maybe 12 years between surgeries. That means fewer surgeries and less scar tissue. At some point, we can hope that perhaps somehow I might just start having less problems with it as I age. I don't know if that is likely, but I can hope!
I asked if waiting longer would endanger me or make the endometriosis more difficult to remove when it was time for surgery. He said he doesn't believe so. Since I have some growing close to my bowel, I will have a colonoscopy soon to ensure that nothing important is being perforated. When I do end up having surgery, he will remove my appendix, as well, which is convenient; I was in the emergency room once many years ago because I thought I was having appendicitis, but it was endometriosis acting up. He said I'm not the only one, and after that, I won't have to wonder which thing is hurting; I will know it's not my appendix!
Additional interesting new knowledge from recent studies:
* New studies are showing that the cause of endometriosis is at the genetic level - women who get it don't have the ability to process progesterone appropriately, so there's nothing to balance the estrogen, which causes the endometrial tissue to grow where it shouldn't be growing. No amount of added progesterone could fix this problem. This is probably why progsterone cream didn't help me at all. Once again, this disease doesn't have to do with my behavior or my personality.
10 years ago, there were lots of theories floating around about why certain women get endometriosis. One was that it was exacerbated by stress and therefore was more frequent in "type A" women, a term which might come up from some doctors in relation to me, especially considering I was diagnosed during a stressful and busy graduate program. But I didn't cause this and I didn't make it worse. God allowed it all to happen to me; I didn't choose it, but I can choose how to respond.
* Hysterectomy with removal of ovaries is not the "cure" for endometriosis it was once thought to be. I don't remember all the statistics from the study he quoted on this issue, but he said around 70% of women who have laparoscopic resection (removal) of endometriosis need further treatment. Fewer women who had a hysterctomy while keeping their ovaries had ongoing treatment (something like 50% of women). And 4-10% of women who have uterus and ovaries removed need ongoing treatment after that. So for most women, the surgeries do help somewhat.
* When I asked why some women seem cured after having their uterus and ovaries removed, he told me that 4% of women with endometriosis have an aggressive form that is essentially different in its genetic make-up. This aggressive form creates its own estrogen and can carry on growing no matter what (it's like an evil parasite!) Since my case has proven extra difficult to eradicate, it's likely that I have this vicious variant.
All of the studies he mentioned are ones I have heard about as I've been reading up on recent developments in endometriosis. They also just make sense. And they relieve me. If I get super bad pain that I can't control anymore by rest and heating pad, then I call the doctor.
Until then, I can just be the lower-energy, resting often person I have been created to be, doing what I can do and enjoying it (slowly, if necessary!)
THANK YOU for your prayers and well-wishes. I will sleep well tonight. Hope you do, too.