Does birth control slow the progression of endo? Really need advice
Hello! I need some advice and direction. I was diagnosed with endometriosis after getting a bilateral salpingectomy and D&C for uterine polys last year. The bisalp was a voluntary procedure, as I do not want to have children and had tried several types of birth control in the past with horrible side effects. I am diagnosed with PMDD, and have been managing my symptoms for the last few years with therapy and Wellbutrin, as both birth control and SSRIs made me suicidal.
I have always experienced pain and cramping with my periods and ovulation, and have had significant digestive issues since I was a teenager, which seems to be correlated to some extent to my period. I have had irregular periods and have gone through months where I bleed constantly, and my periods themselves are incredibly heavy, to the point that I cannot use tampons and have to use menstrual cups.
They discovered during the surgical process that I have a retroflexed uterus, with it being almost bent backward in my body, and that I have two confirmed spots of endometriosis, one on my uterosacral ligament that is very close to my bowel, and one small spot on the side of my abdomen.
Recently, my partner said he felt a strange hard bump near my cervix. I went to my gyno, and they said it looked like I had a cyst near my cervix, but not on it, and that it could be endometriosis. I saw the NP instead of my doctor, so I don't have confirmation, but I am horribly freaking out since the appointment. I didn't even know it could spread into the vagina, and although I'm not experiencing much pain now, I have noticed strange cramping in my lower pelvis, and more spotting after sex.
I am desperately trying to avoid getting back onto any type of hormone treatment, but I'm scared that the endometriosis is spreading. I understand that it is estrogen-fueled and that progestin-only birth control is supposed to help balance that or prevent the cells from shedding, but does it prevent the spread? When I was on the combo pills, I gained a lot of weight and experienced migraines for the first and only time in my life. After the pill, I tried the NuvaRing as well as progestin-only pills, both made me suicidal - it felt like I had my PMDD symptoms all of the time, and I don't even remember most of that period of my life. I felt like it messed my mental health up so bad that I am still building back up to who I used to be, over five years later.
My doctors have suspected that I have other autoimmune issues going on as well, and I suspect I may have lipedema, which would also react badly to a hormonal change. My gyno is incredible, but she seems a bit lost as to what else she can offer me if not birth control. She suggested Orilissa, but I do not think my body/mental health would be able to handle that either, as it still impacts hormones. I was also told that there isn't really a point in getting excision surgery if I'm not willing to take birth control, because it would just grow back.
If my endo is spreading, I obviously want to do what I can to prevent that, as I keep reading horror stories about what happens when it spreads, but I cannot imagine having to go through what I went through on birth control again. If it truly does prevent the advancement of endo, I would be more likely to consider other birth control options, as I know that there's more than just what I tried, but if it is masking the symptoms or if the evidence isn't really there, I just don't know if I can risk it. I would rather change my entire lifestyle, try supplements, change my diet, etc. to manage this condition with a sound mind than have to lose my personality and mental stability. I'm sorry that this was such a rant, I just need to know if anybody has been through something similar, I feel so alone.